Pursuing excellence in dementia care

Professor Dame Louise Robinson heads up Newcastle University's Institute for Ageing. She tells us more about her team's work and her goals to establish the University as a global leader in the field.

Professor Dame Louise Robinson – Director of Newcastle University’s Institute for Ageing, Professor of Primary Care and Ageing, and Regius Professor of Ageing – didn’t originally set out to pursue a career in academic research. She was training to become a GP when she developed an interest in palliative care for patients with cancer.

“At that point in time, the role of the GP was changing,” she says. “We were being expected to take on more responsibilities around long-term care and shared care. It occurred to me that high levels of funding were being put into cancer research but quite the opposite was happening with dementia, and it was dementia for which there was no cure.”

Louise began working with dementia patients and their families on a clinical basis, seeking to lift some of the stigma associated with the condition. Around 10 years later she became involved in research.

“I remember reading a national audit report on dementia care and thinking that we weren’t any further on than we had been many years before when I was a young GP,” she remembers. “I felt disillusioned and angry that we were still struggling with such an important illness.”

Putting knowledge to work

Improving care for patients with dementia, a devastating illness that she felt was neglected by medical research, became a driving passion for Louise. “Although there has been a lot more research in the last couple of decades, I’m not sure it’s had an impact on practice,” she says. “We have some drugs now that are not curative but do improve quality of life and slow down the progression of dementia, but in terms of specialist services there are considerable and unacceptable geographical inequalities around the country.”

Louise describes her progress in academia as being hampered at first by lack of funding. "It was about winning a small grant and learning on the job. One small grant led to a large grant which led to more prestigious grants. A key turning point in terms of professional development was winning a National Institute for Health Research (NIHR) professorship in 2012."

Since then, larger and more prestigious grants have followed, most notably from the Alzheimer's Society, which awarded three Centres of Excellence nationally, one being Newcastle. The record £1,680,224 grant, which will be awarded over five years, will enable researchers to focus on priority areas within dementia care research.

Lousie explains: "The Alzheimer's Society wanted to identify centres that are already well established for doing great work in dementia care and try to develop their capacity not just to improve current care, but also to develop the next generation of dementia researchers who will continue to work in an area that's not as popular or sexy as some areas of medicine."

Supporting professionals

A central aim of the project is to develop a shared care pathway that is sustainable and feasible and allows good quality care to be delivered to patients with dementia by their GPs. “It’s the project closest to my heart,” Louise says. “I want to make sure that the people who are delivering that care have the knowledge and the support and the resources to give good quality care and not just bumble along.”

A key aspect of Newcastle University’s research into dementia is identifying the factors that cause – or increase people’s risk of developing – the condition. The research follows on from a Cognitive Function and Ageing Study started in the 1990s.

I believe just saying the word 'dementia' openly makes a big difference

Prof Dame Louise Robinson

“We secured funding from the Medical Research Council to start up a new cohort of over 10,000 65-year-olds, 20 years after the first,” says Louise. “We did all the same measurements in terms of assessing how they were ageing, and discovered that the rate of dementia among the second cohort was almost 20% less than had been predicted. That led us to conclude that factors like exercise, good diet, not smoking, and treating illnesses like high blood pressure and diabetes could prevent dementia or delay the age at which it came on. It was very exciting.”

Researchers have made great strides in recent decades towards improving the quality of dementia care, seeking ways to prevent and treat the condition, and removing the stigma that surrounds it, Louise believes.

“My personal experience is that just saying the word ‘dementia’ openly and getting people to talk about their experiences of it makes such a big difference,” she says. “Having that discussion and saying the word rather than hiding it or using euphemisms is a huge step forward. Also taking a positive approach like we’ve done with cancer or HIV and saying: ‘We don’t have a cure, but we do have effective treatment that will help you live better with the illness.’”